Research
The International Lymphoma Epidemiology Consortium (InterLymph) is an open scientific forum for epidemiologic research in lymphoproliferative disorders. Established in 2001, the Consortium is an international group of scientists who undertake research projects that pool data across studies to better understand lymphoma risk factors.
LC is a member of HoLISTIC (Hodgkin Lymphoma International Study for Individual Care), an international consortium coalescing a team of diverse experts from across the world to study the salient aspects of Hodgkin lymphoma prognosis, epidemiology, treatment, survivorship, and health outcomes across all age groups.
As many blood cancers are rare, and healthcare practice varies across the EU, a lack of data on relevant outcomes represents a challenge for clinicians, researchers, and other decision-makers like regulators and HTA bodies, resulting in limitations for patient access to the best healthcare. LCE is a member of the HARMONY Alliance, which aims to use “Big Data and Big Data analytics” to deliver information that will help to improve the care of patients with these diseases.
HARMONY will gather together, integrate and analyse anonymous patient data from several high-quality sources. This will help define clinical endpoints and outcomes for these diseases, which are recognized by all key stakeholders in the Healthcare -systems. The Alliance was established in 2017 and is planned to last for five years.
Healthcare Professional Organisations
Lymphoma Coalition Europe has one of three patient representation places on the committee, which has the purpose of serving and furthering the interests of haematologists and the discipline of haematology in Europe.
LCE is a member of the Patient Organisations Work Group, which works with the EHA secretariat and board to develop a patient advocacy track for the annual congress and ensure patient representation in key EHA initiatives.
LCE works closely with the Patient Advocates Working Group, ensuring patient representation at the annual congress and in key society initiatives.
LCE is a member of the Patient Advisory Committee, which is represented at board level and provides input into all the ECCO’s work on promoting and implementing the concepts of multi-disciplinarity in cancer diagnosis, treatment and care.
LC is actively supporting the development of ELI’s programmes.
LC and HNHCP work together on a number of educational programmes.
Other Organisations
LC is a member of the Union for International Cancer Control (UICC). UICC is dedicated to taking the lead in convening, capacity building and advocacy initiatives that unite and support the cancer community to reduce the global cancer burden, promote greater equity, and to ensure cancer control continues to be a priority in the world health and development agenda.